How do you find balance while caregiving?

I just finished Travelers To Unimaginable Lands. Near the end there is a passage that discusses / addresses caregivers regrets. Many of the responders add "But this time I would do it differently." Are there caregivers who could/would draw on their experiences and share what they would have done differently? I know that this would be very helpful to me.

Thanks, Karla, for what you wrote. Quite a lot sounds like what I’m trying to do. A lot more from the store’s freezer section, for example. And, I also worry about the future, but there is no way we can know. I am trying to believe that God will help me handle whatever comes.

@bobcmcc Hello Bob,
Thank you for mentioning this book- I am looking ahead to reading it. Communities like this one help so much, and I am always open to suggestions to manage what can feel unmanageable.
Today, I’m so tired of it all to be honest.
Sending you virtual support and hugs.🤗

@kjc48 Hi Karla,
I greatly appreciate your thoughtful response. I too cherish the early mornings when there is peace and personal time.
Of course, just today she woke up rearing to go at 7 am and I’m dreading this may change the entire routine. But dealing with dementia makes one realize the absolute need to be adaptable and flexible in life. Kind of like living on a flying trapeze. I’m so darn tired today.
Sending you my best thoughts, and lots of gratitude for your supportive comments here! ❤️

@bobcmcc Bob, I saw your post and wrote down the book's name, as I'm finding reading about this journey is helpful. The "but this time, I would do it differently" is something I still say over and over about the loss of my mother (26 years ago) who didn't die of Alzheimer's but of cancer. She lived alone in one state, I was working for IBM in another; my husband in another, and I was an only child, trying to balance, what my mother needed remotely. I couldn't be there for her physically and emotionally which is what she needed the most. She knew her diagnosis initially was 30 days to live, and she had to have been really scared. Two and half years later she passed. Although cancer is different from the stages of MCI, Alztheimer's/Dementia, any life-threatening situation runs its own stages. I tried to travel down, but I was in the last 5 year earnings (running a large operation), where my corporate retirement pension was in the mix). I handled getting everything she needed remotely, resources into the house, etc. I just wasn't there for her in the way she needed me the most - by her side. I still regret not taking a leave of absence. I regret not supporting her through chemo, radiation, etc. showing the love and guidance she needed, to where she wasn't so afraid. Love has no boundaries, but we have to be there with them. I believe our touch, our laughter, just our day-to-day presence, does matter, in whatever makes them feel better, and takes their fears away. I see it in my husband through his good and bad days, knowing I'm the rock by his side. There's no greater gift than just really being there - both physically and emotionally vested - by their side. Best, Karla

@gratia Yes, adaptable, adjustable, like a flex doll; that's what we are in all of this, while they go "in and out" and we never know whether they get up at 7, 9 or 11.
I'm fortunate right now, my husband gets up around 9:30 ish so I have some free time. Enjoy your "changing" day. Thanks for your supportive comments, too. they make a difference! Best, Karla

@tracidw
Yes. I miss my "old" husband. I miss his intellect, his wit, his extraordinary ability to do all things tech-related. Sometimes I explode, but more rarely, and usually after he has asked me the same thing ten times in a row. Bottom line is that I would rather have him here as he is than not here, and there are actually aspects of this "new" husband that I like more. So, I hang on to those.
I realize how blessed I am to have caregivers in our home, paid for by the VA and long term care insurance. At almost 83, I just don't have the physical strength to deal with my husband's almost complete loss of control over his legs and much of the use of his arms. He is now in a wheelchair most of the time, and transferring him onto the toilet or into bed is a huge challenge when someone is not here. I just learned about our eligibility for the VA program eight months ago, and it has been a life saver. If any of you or your spouses may be eligible for VA benefits, I implore you to check them out. My husband retired from the Air Force in 1989, and it was just this last October that we became aware of and applied for benefits (other than his retirement pension and insurance).
So, yes, I grieve the loss of the intellectual exchanges that we so used to enjoy, but having help (no children and our other relatives live hundreds of miles away) from other sources is helping me stay well so that I can do everything I can to help my Rick preserve as much dignity as he can. I hope this helps somebody.

@bettes I hear you, Thank your husband for his service to the country. I'm so glad you have sources of help. Enjoy those positive "new" things. I'm smiling because my Mom's new thing was to tell me a few things from her childhood that were her secrets. No, Mom! I don't want to hear that. Nothing terrible, just makes me laugh. And yes, the intellectual changes are rough. No more conversations, laughing, playing scrabble or doing things together...so much. But, we keep on..... Hugs

I am currently reading a book called "Loving Someone Who Has Dementia" by Pauline Boss, PhD.
It has been very helpful to me in learning how to view how the changes in my husband are affecting our marriage. The marriage relationship is different from what it was but that is not necessarily bad, just different. I believe he still loves me and gives to me as he is now able. Silver lining, he no longer gives me grief when I want to redecorate or buy something he thinks we don't need. Now I buy whatever pleases me and lifts me up.
It also addresses the ambiguous loss of your loved one. The being there and not being there. I am learning to accept the changes and value the new different relationship. I needed to change my view to see that each day he is still here presents an opportunity for positive experiences for him and for me. God bless you all.

@bobcmcc I wish my husband would have/could have done more. Even the littlest things, like folding laundry...run a vacuum, plate his own food etc. He would give em a try and the struggles were hard to watch so I would end up doing it for him. I wish now I would have let him struggle a little bit more to see how far he could get but my impatience took over and I ended up doing it for him. Which didn't benefit either one of us, because i was doing everything. I just couldn't keep watching him struggle... so was me taking over benefiting me or him? And then as time went on, he didn't even want to try anymore. I don't know if it was because he couldn't remember or would just rather not because it WAS a struggle for him. I feel if I would have just let him keep trying maybe his dementia wouldn't have progressed so fast, cuz then he would have had to still use the little he had left of his memory. I guess I look back on it and i feel I was responsible for some of his brain atrophy. He passed away a few months ago and if I had to do this all over again, I would have let him do more and for me to step back a little bit.